Tuesday, June 19, 2012


There are days where it just weighs heavy.

Where my eyelids droop and I can feel the tear ducts overflowing.

Where I can't bare to think of another finger poke, site change or low.

Where I don't understand how and why we are here.

Why my sweet baby was given this disease, and what the purpose of it really is.

Sometimes it takes all the strength I have to make it though the day without crying.

Some days worse than others.

I fear another diagnosis.

I fear another disease.

I fear every sickness, every ailment thinking something is always more wrong that it is.

I fear having no supplies.

I fear that we don't have insurance.

I fear losing my son in his sleep.

I fear that he feels robbed of his childhood.

I fear that I am not the same person.

And you know...

I am not.

In some ways I am stronger than I ever could have imagined.

In some ways I am braver than I ever was.

And in every way I have learned the true meaning of courage and strength through my son.

But there is stil that small dark corner of my heart that cries, and yearns for the before.

I know its not possible. I know this is our life and new normal and after almost 4 years I should just make peace with it.

But when my son asks me why him? I can't help but wonder the same thing.


Lora said...

Sometimes I wish Justin would ask "why me"; Even if I will never have the right answer to give him. He keeps it bottled up and it makes me sad.

It weighs heavy on me too.

Sherry said...

I still have moments when I just can’t believe this is our life now. They are fewer and further between now but I still have them. And when I do, I feel a hint of that profound sadness that I felt for well over a year after her diagnosis. I feel it too, Alexis. I know just what you are talking about. ((HUGS))

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